Michigan Representatives Discuss New Medical Bill
Michigan reps in Congress touting bill to speed up discovery of medical cures
By: Ryan Stanton
It’s been less than three months since Chad Carr, the 5-year-old grandson of former University of Michigan football coach Lloyd Carr, died following a 15-month battle with an inoperable brain tumor.
But his legacy lives on.
Chad’s passing in November came at the hands of diffuse intrinsic pontine glioma, an extremely rare type of pediatric brain cancer.
The fact that there’s currently no cure was noted on Friday as U.S. Reps. Debbie Dingell and Fred Upton traveled to southeast Michigan to discuss the bipartisan21st Century Cures Act, a multibillion-dollar piece of legislation pending in Congress.
The two representatives, who hail from different political parties, met with patient groups, families, doctors and researchers to discuss the legislation introduced by Upton and U.S. Rep. Diana DeGette in hopes of speeding up the discovery, development and delivery of life-saving drugs and devices for diseases such as cancer, Alzheimer’s and diabetes.
The legislation includes billions of dollars worth of new research funding for the National Institutes of Health and would overhaul the process the Food and Drug Administration uses to assess and approve new medicines.
Among those at Friday’s roundtable discussion at the University of Michigan-Dearborn was Tammi Carr, Chad’s mother.
Following the roundtable, the representatives traveled to the University of Michigan in Ann Arbor for a discussion with leading doctors and researchers to learn how their work would be impacted by the 21st Century Cures Act. University of Michigan President Mark Schlissel joined in the discussion.
“It was great to host Chairman Upton in Southeast Michigan to raise the drumbeat about 21st Century Cures,” Dingell said in a statement afterward.
“This truly bipartisan legislation transcends political parties and will benefit every family in Michigan and across the country,” she said. “We heard heartbreaking stories from patients and family members of loved ones who passed away and how 21st Century Cures gives them hope for the future.”
Dingell said those personal stories bring an even greater sense of urgency to the need to develop the next generation of medical cures. She vows to continue working with Upton to get the legislation passed and signed into law.
“Every day that we wait is another day that cures don’t get to the patients who need them,” Dingell said.
The legislation passed the House floor 344-77 last July, with mostly Republicans against it. It’s now being considered by the Senate Committee on Health, Education, Labor and Pensions.
“21st Century Cures is all about providing hope for patients and their loved ones here in Michigan, and across the country,” said Upton, a U-M graduate.
“Today’s roundtable was another opportunity to hear directly from those patients we’re fighting for, and to get the word out about our bipartisan efforts to get fast, safe, and innovative treatments out there for everyone.”
According to a summary sheet, the 21st Century Cures Act would break down barriers to sharing and analyzing the growing amount of health data generated in research and clinical settings and strengthen the FDA’s ability to take the direct experience of patients with particular diseases and conditions, and the effect of their current therapies, and use that data to improve potential treatments.
Additionally, it’s intended to provide guidance for broader and more collaborative development, understanding and utilization of drug development tools such as biomarkers, which can be used for earlier assessment of how a particular therapy is working and on whom, and advance personalized medicine, making sure patients can be treated based on their unique characteristics at the appropriate time.
It also is intended to modernize clinical trials and allow greater use of patient-generated registries that speed the recruitment of participants, allow researchers to screen patients in advance to determine if their genetic predisposition makes them better candidates for targeted therapies, and clear the way to use new and creative adaptive trial designs and deploy the most modern statistical and data tools, while reducing duplicative or unnecessary paperwork requirements.
The legislation also aims to remove regulatory uncertainty for the development of new medical apps that generate real-time patient data, while providing new incentives for the development of drugs for rare diseases.
“Small populations and a lengthy development process often make the discovery of treatments for rare diseases and conditions challenging,” reads the summary of the proposed legislation. “HR 6 creates new economic incentives for the development of therapies for serious and life-threatening conditions, including rare diseases. New incentives will translate to more, faster cures.”
Additionally, the legislation aims to create a new coordinating mechanism to remove choke points that slow the connections between scientific discovery, drug and device development, and how therapies are approved and made available to patients.
The bill calls for an appropriation of $1.86 billion per year for five years to establish a new NIH and Cures Innovation Fund for biomedical research and other programs, with offsetting revenue from selling oil from the Strategic Petroleum Reserve.
“Since experts believe investments in younger scientists will speed the discovery of new cures, HR 6 also includes provisions to invest more resources in the next generation of scientists for the next generation of drugs,” the summary states.
The bill’s supporters are touting it as not only a patients bill, but also a jobs bill ensuring the U.S. remains the medical innovation capital of the world, avoiding jobs in the medical device and biopharmaceutical industries from going overseas.
“Because of our leadership, U.S. medical device-related employment totals over 2 million jobs, and the U.S. biopharmaceutical industry is responsible for over 4 million U.S. jobs,” the legislation summary sheet states. “NIH funding currently supports over 400,000 jobs at research institutions across the country, including jobs for young scientists. The policies in HR 6 will help us fight off foreign competitors so we can keep these jobs, and add more, here at home.”
Ryan Stanton covers the city beat for The Ann Arbor News. Reach him at firstname.lastname@example.org.